HIV Stigma and Awareness: Time to Change Our Message

I am not a victim of HIV or AIDS. I am not someone to fear or pity. I am not beneath anyone, less of a person, or unworthy because I am HIV positive. I am a person living with HIV. I am me! Not the same person I was before I was diagnosed, I am better than I was. I am more than I was. I am more now than I probably ever would have been without HIV because the virus has made me, allowed me, facilitated me, to grow and evolve in ways I never would have been able to without it. I know this. I will not allow ANYONE to pity me, stigmatize me or try to make me feel less than who I am. I do not give anyone that power over me. Because of this I say here, LOUD and CLEAR, for me as a person with HIV, personal stigma is irrelevant!

HIV as a virus, an epidemic, a pandemic, evolves, mutates, changes. So must we as people with HIV and as a community. For so many years we have fought HIV stigma. We have demonstrated and raised our voices, gently educated and shared our stories. We've done good. With 30 years since the emergence of HIV, the science of HIV and HIV treatment has changed the pandemic in monumental ways. Why is our message regarding stigma still the same? Isn't it time to modify our tactics?

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We need to change our message.

The biggest concern regarding stigma is that it helps to spread HIV by creating a fear of being HIV positive and thus preventing people from getting tested.

Data generated over the past few years has told us if we are on ARVs and our viral load is undetectable or near undetectable, our infectiousness and ability to transmit HIV is very low.

If we want to change the way society views HIV and people living with HIV, as well as prevent the spread of HIV, what we need is campaigns, articles, interviews, public service announcements and a general consensus promoting HIV testing as vital because an HIV viral load puts people at risk. We need a clear focus on the fact that 20% of people don't know they have HIV, are not on treatment and thus probably have detectable viral loads, AND THIS IS WHERE THE DANGER LIES. Let's base our message on science, not emotion! The focus needs to be on HIV viral loads, something ANYONE can have if they have not recently been tested. Testing is essential. Treatment is essential. We are not what people need to fear -- a substantial viral load due to people not getting tested and treated is. A lack of protecting others against transmission due to not knowing one's status is. Let's take the focus off us and put it where it belongs -- on the virus. Not being tested is dangerous. Not being tested is the pharaoh. Not us who know our status.

Wouldn't this message also put pressure on the powers-that-be to offer ARVs to everyone with HIV including those on the ADAP waiting list?

More research needs to be done measuring the protective benefit of ARVs, particularly in men who have sex with men, as most of this research was performed in heterosexuals. It does appear there is a substantial decrease in rate of infectiousness with ARVs for everyone -- it is just unclear how much of a decrease that equates to with anal sex in MSM. Infectiousness is lower but there may be less of a benefit as found in a small recently released study.

A 101-person study published on the online edition of AIDS found that 18% of the MSM studied had a detectable viral load, half of which had HIV in their semen. Of the men who were undetectable, 25% had HIV in their semen. The articles on this study and abstract did not state how much of a viral load was found in the semen of these men and I can't afford a subscription to AIDS (the online journal) to thoroughly review and share with you the complete data. More research needs to be done on men who have sex with men and maybe even an affordable assay developed that measures viral load in semen, so each individual can gain a better understanding of their personal potential risk of passing on HIV.

In November of 2011 the CDC released a report stating that "only 28% of the 1.2 million people with HIV in the U.S. have a controlled viral load." This study has been referenced by people stating that the up to 96% reduction of infectiousness of people with HIV reported in the HPTN 052 study is misleading because of the low number of people with HIV who have undetectable viral loads.

What many articles about this study and abstract failed to fully explain is that the 72% of people with detectable viral loads in the study described included the one-fifth of people who do not know they are HIV positive. The actual number is about 50% of people with HIV who know they are HIV positive and don't have a controlled virus. Also not mentioned by the media is the fact that an undetectable viral load is not necessary for a reduction in risk to be present, only a low viral load. From the available data it appears the lower the viral load, the lower the risk of HIV transmission.

The CDC also published the following on their website: "The great majority of persons with HIV infection do not transmit HIV to others." CDC estimates at least 95% of those living with HIV infection did not transmit the virus to others in the year they reviewed -- an 89% decline in the estimated rate of HIV transmission since the peak level of new infections in the mid-1980s.

This statement highlights the need for testing and treatment, as well as the personal responsibility that people living with HIV that are aware of our status take to protect others against transmission.

Stigma hurts us as individuals, as people with HIV and an HIV community. But do we give it too much importance in this aspect?

Why do we keep telling out stories in the general media (outside of HIV publications and websites) in a way where we're saying "accept me," "I'm a good person," "I'm just like you"? By saying these things we recognize the view of hate mongers that we should not be accepted, are bad people and are not like everyone else. We can educate people about HIV and try to lessen the fear and worry of people who think they may be infected just as well without such statements or themes and even better by adding this new message.

Aren't we simply playing on someone else's playground? Fighting stigma the way those who stigmatize us determine we do; in the defensive. By promoting an atmosphere of defense to ignorance are we not unintentionally promoting its continued existence rather than contributing to an environment where its general effects are lessened because it is not a recognized or addressed view? Those who are simply uneducated will eventually learn, the rest won't, no matter what we say or do.

In order to progress past HIV stigma and promote awareness, shouldn't we be the first to make that change, removing their power to hurt us personally and as a community by changing the message that people hear about HIV and people with HIV?

On HAART we are less infectious and the large majority of us protect others in every way we can from possible infection. These are recognized facts as the above CDC quote shows (also see my blog entry "Death of a Pariah") and equate to us not being "a danger to society." Continually stating these facts in the media would go much further than simply telling our story so people can determine that some of us are likable people and deal well with being HIV positive.

Let's take the focus off ourselves and put it where it belongs -- on HIV. Let's stop playing the hand dealt us by the ignorant and start playing a winning game. A game that scientific knowledge and years of experience in the field of HIV and has taught us!

It's time to change our message!

"Expecting the world to treat you fairly because you are good is like expecting the bull not to charge because you are a vegetarian."

Comment by: Marc C
(State College, PA)
Sat., May. 5, 2012 at 12:35 pm UTC
We need to change more than the message. We need to change the vehicle the message is sent from and sent to.

My own experience has shown that we become active participants in our own stigmatization by refusing to speak up and speak out. We've nothing to fear but fear itself when someone says something derogatory about those who have HIV. Why are we refraining from countering distortions about people with HIV and how you acquire the virus? It's a disease, it's not who you are.

Comment by: John
(Pittsburgh, PA)
Wed., Apr. 18, 2012 at 9:34 am UTC
A bit more to my previous comment. One big reason I have so much fear is that over the past 19 years, I haven't always had the personal integrity to inform my sex partners of my status. I took steps to be "safe" but I feel that I could be prosecuted because I haven't disclosed every time. I certainly never intentionally infected anyone, but how can that be proven? There are laws around that might say I'm a felon, or guilty of attempted murder...how do we get over this?

Comment by: John
(Pittsburgh, PA)
Wed., Apr. 18, 2012 at 9:30 am UTC
Wow! Thanks so much for writing/saying this. I just passed a milestone on my 39th birthday last week. I've been alive with HIV longer than without it. However I've lived under the cloud of stigma the whole time. I've struggled with self-esteem my whole life and am now finally viewing myself as whole and not less than because I got infected. The message change is crucial! I heard it in Sec. of State Clinton's speech a few months ago and I want it to be shouted from the mountaintops. Undetectable Viral Load = Less risk of infection! I'm trying to build my confidence to be totally out about my status, but I really struggle with it. Being "in" to my broader circles let's me see just how much stigma is really out there. I want to help spread the message...but am still so afraid of "coming out as poz" to everyone. My closer circle of friends, my partner of 10 years and my parents know, but for some reason I'm not fully out. I think it's because I, even being positive still attach stigma to those with HIV - :-( Intelectually I get it, but on an emotional level not sure I'm ready for it.

Comment by: Al
(Jacksonville,Fla)
Fri., Apr. 20, 2012 at 12:24 am UTCI am not HIV+ but my partner of 7+ years is. I am also a psychotherapist. A suggestion you might want to consider is why do you feel you need to be out to the whole world about it? You sound like you have a strong support system that does know about it, and if your appearance continues to be healthy in spite of your HIV status why is there a need to let anyone else know about it if you choose not to? You don't go advertising it to the world if you are infected with herpes, for example. Why should this be any different?
Good luck

Comment by: Jeannie WraightFri., Apr. 20, 2012 at 7:49 pm UTCHi John,
Thank-you so much for your comments. Coming out to the world is a very personal decision. Everyone's life and circumstances are different. The bottom line is how will it effect your life if you do so. You have to realistically look at how much stress, drama and pain it will cause and decide if it is acceptable to you at this time or not. It may never be the right time and THAT IS OKAY. We are people first and then people with HIV. Period. We have to take care of ourselves and do what's right for us and our lives in order to be mentally and physically healthy. If you feel the need to help support the fight against HIV there are plenty of things you can do and keep your anonymity. Feel free to email me if you want some ideas. The laws around HIV are archaic and need to change. There is work being done towards it but not enough and not quickly enough for those presently unjustifiably persecuted. Good luck to you whatever you're decision may be. Happy belated birthday. I'm an Aries too! All the best to you John.

Why does John feel like he needs to be "out to the whole world"? I dunno, maybe for the same reason gay people have felt a need to be "out" to the whole world about who we sleep with for the last several decades. Maybe for the same reason certain religions wear their religious obligation on their sleeves. Being in ANY closet enables stigma, an issue which deeply victimizes people with HIV. When you've had to live with real stigma and victimization (as opposed to the fake stigma that middle class gay men think they face)-you understand, in a very profound way, WHY someone would want to "go advertising to the world". Herpes doesn't get the shame that HIV gets. People with herpes aren't faced with a constellation of laws designed to segregate them, and leave them emotionally crippled. Their continued survival doesn't depend on an activist vehicle that challenges overpriced drugs and a callous, stagnant medical system. Herpes and HIV are apples and oranges, and the fact that you would even suggest to someone, as "a psychotherapist" with a "HIV+ partner of 7 years" that they keep it to themselves, makes me feel terrible for the people in your life.

Comment by: Edward S.
(Montreal)
Thu., Apr. 12, 2012 at 9:40 pm UTC
I agree with everything you have said 100%. Thank you for putting it together so beautifully...

Comment by: John-Manuel Andriote
(Norwich, CT)
Thu., Apr. 12, 2012 at 7:12 pm UTC
I like what the lady has to say! This is what empowerment looks like--flipping stigma on its ugly head and defining ourselves as we wish to be defined, not by HIV, not by others. Thank you for saying all you say here.

Comment by: Jeannie Wraight
(Bronx)
Mon., Apr. 23, 2012 at 9:44 pm UTCThank-you Olga. You're so right- I think a lot of people still don't get that they are at risk even if they're not in a high risk group and it's perpetuating the continued spread of HIV.

Comment by: survivor4life
(jamaica w.i)
Thu., Apr. 12, 2012 at 3:08 pm UTC
Articles like these give so much hope and inspiration to someone living with Hiv/Aids and the stigma that still surround us especially in the caribbean,I was infected by someone who knew that he was infected, it was the most devasting thing that could happen to anyone by someone with a malicious intent. After getting myself out of the shock and horror of being HIV positive I went online searching for solace and found The Body...my source of strength education and inspiration, apart from my doctor I told two persons that showed an interest in me and to my surprise the first one just disappeared and the next one treated me like a dog even calling me a demon. I live in he shadows hoping for a cure as I can tell no one without being stigmatize or being flatly rejected. I live each day hoping that one day I will be accepted as a human being. For now I am grateful for The Body my source of strength.

Comment by: Jeannie Wraight
(Bronx, NY, USA)
Fri., Apr. 20, 2012 at 8:02 pm UTCHi and I'm glad you liked this blog. I'm sorry that you are having such a difficult time. May I suggest you find a support system to help you through. There are so many of us out here that provide love and strength to each other. If you haven't done so already, why not start a Facebook profile just for dealing with HIV. You can use any name you like and don't have to give away your true identification. Please free to friend me on Facebook at: https://www.facebook.com/profile.php?id=100002471216515&ref=tn_tnmn My name there is Jeannie HIV Plus and I will help you find tons of new friends that are dealing with the same type of issues. All the best to you.

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Jeannie Wraight (known as Jeannie Gibbs before her marriage in April 2011!) has been an AIDS treatment activist for over 14 years. She was a longtime member of ACT UP New York and has participated in countless demonstrations and actions. She has attended over 75 HIV conferences around the world and writes for several HIV publications. Ms. Wraight has sat on many advisory boards as well as the Board of Directors of Health People, an AIDS service organization in the South Bronx, New York. She lives with her partner in the Bronx, where she works on her Web site HIVhaven.com and advocates for novel HIV therapies and nutritional supplements for people with HIV/AIDS. She is also an animal rescuer.

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